“It’s as if I’m the one suffering”: Narratives of Parents of Children with Disability in the Philippines

Abstract

Background. Children comprise a significant proportion of persons with disabilities (PWDs) in the Philippines, and represent a major public health challenge. One under-explored topic is the "lived experiences" of their parents and guardians as well as the roles they play in caring for their children. This qualitative study responds to this research gap by eliciting and foregrounding their experiences and narratives.Methods. Six focus group discussions (FGDs) were conducted among parents of children with disabilities (CWDs) in Davao City and Tagum City. These were complemented by 12 key informant interviews among healthcare providers in both cities.Results. For many parents, coming to terms with a disability is a difficult and lengthy process, but one that ends with a measure of relief and eventual adaptation. Living with disability, meanwhile, is fraught with medical, financial, educational, and social challenges. A positive religious outlook allows them to make sense of disability, helping them to overcome these challenges. Support groups and the health care system are likewise crucial factors towards family resilience. Conclusion.Our findings show that the experience of disability is shared among family members, particularly, the parents of CWDs; thus, underscoring the need for a family-centered approach in policies, clinical care, and communications efforts involving children with disability in the Philippines.

Lived experiences of caregivers upon receiving occupational therapy through telehealth amidst the pandemic

“…Typically, any health care professional working with a Filipino family would be considered a 'family member', at least throughout the duration of patient-care. Moreover, a group of Filipino parents were found to share the experience of disability as a collective, which is reflected in the title of the study written by Lasco et al (2022), "It's as if I'm the one suffering". According to Lasco et al (2022), a family-centered care approach must be incorporated in policies in relation to people with disabilities, entailing not only assistance in medical care but sustainable support to the parents to activate their economic and therapeutic roles.…”

“…Moreover, a group of Filipino parents were found to share the experience of disability as a collective, which is reflected in the title of the study written by Lasco et al (2022), "It's as if I'm the one suffering". According to Lasco et al (2022), a family-centered care approach must be incorporated in policies in relation to people with disabilities, entailing not only assistance in medical care but sustainable support to the parents to activate their economic and therapeutic roles. Another way to reduce the burden of the Filipino family living with and affected by disability is the consideration of family member's quality of life and well-being in relation to the occupational therapy plan and implementation (Gomez & Gomez, 2013).…”

Children with special needs and their access to rehabilitation services in the Philippines: A Q methodology study on perceived barriers by family members

“…Although there is already an insurance package for children with developmental disabilities [27], most families still spend out-of-pocket to avail of these therapy services. Although we do not have any statistics on the capacity of Filipino families to pay for therapy services, a recent qualitative study by Lasco and associates [28] ascertained that parents of Filipino children with disabilities financially struggle to provide for their child's medical and therapy needs. During the pre-pandemic period, children with disabilities had to travel an average of 5-6 km to reach the nearest health facility [29][30][31], and during the pandemic, telemedicine and teletherapy posed barriers, such as internet connectivity issues, internet budget constraints, and digital literacy concerns [32][33][34][35].…”

Parents’ Narratives on the Online Content Risks among Filipino Children

“…The most significant relationship that affects a child's growth and development is between a parent and child (Lasco et al, 2022). For example, the advancement of self-help skills among young children can be attributed to the encouragement and motivation of their parents (Sobrebiga & Medez, 2020).…”

“…The parents' narratives are valuable in revealing their children's experiences. This approach is observable in the works of Corey et al (2021) and Lasco et al (2022), where the parents' narratives were used to explore their children's experiences.…”